I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Angela Michelle is a professional photographer and yoga
instructor living in San Antonio, Texas. She was diagnosed with
CTEPH in January 2018 after years of experiencing symptoms. Angela
underwent PTE surgery in August of 2018 at UCSD.

My name is Angela Michelle. I am from San Antonio, Texas, and I
was diagnosed with CTEPH, which is a form of pulmonary
hypertension.

How I was diagnosed is actually quite a story. I began getting
short of breath probably about 2013, and I kept bringing it up to
my doctors. I was told it was allergies, it was asthma, respiratory
infections, it was just that I was overweight. I would take
whatever meds they gave me. I'd use inhalers. Nothing worked. I
would try to work out. I was developing an intolerance to exercise,
and so this continued on for quite a few years.

Then in 2016, I actually had a stroke. At that time, they
realized I had multiple pulmonary embolisms, as well as my carotids
were blocked. They decided to try to figure out what would make a
then 38-year-old woman just throw all these clots, so it was
determined I have antiphospholipid syndrome, and that was the first
I'd ever heard of this particular disease. That was 2016, and I was
short of breath at the time, and they told me, oh, it'll get
better. They'll dissolve on their own, and so I left the hospital,
continued on with my life. I was really lucky in that my stroke
didn't leave me with a whole lot of physical limitations. It did
leave me completely blind in one eye, but I found I was able to
adapt to that.

So as I continued on, I just kept getting more and more short of
breath. I am a yoga instructor, and so I would notice that even
during yoga class, I was way out of breath more so than usual. I
again brought it up to my doctors and they decided to send me to a
pulmonologist, but it was going to be a long wait, and in the
meantime, I ended up developing a cyst that needed to be removed,
and it was totally unrelated to anything, but because of me being
on blood thinners, it did require a hospitalization.

While I was there, and I was going to get put under to remove
the cyst, they realized that my O2s were really low, and it was so
low that they decided not to put me completely under, so I had to
have the operation awake. Then at that time, they decided to send
me home on oxygen, and when I kept trying to figure out like, well,
why is this happening and what it is, they didn't seem to know, and
they're like, "you'll just have to wait to see the pulmonologist."
This happened a little over a year after my stroke, so this was
July of 2017.

While I was in the hospital, I was very active on social media,
Facebook and Instagram, and I shared a lot of my story, especially
my health condition because I actually had two hospitals
misdiagnose my stroke, and it was a third hospital that caught it.
so I feel like there's a lot of misconceptions about that as well.
So I am very active in telling my story. At that time, I was
writing on Facebook and I was sharing that I was in the hospital
and my low O2s, and it turns out an old friend of mine who I
actually knew from middle school and high school had become a heart
surgeon, and he was actually working out in L.A. He privately
messaged me and suggested that they look into pulmonary
hypertension, particularly CTEPH. He explained that it was really
rare, but that I kind of fit the bill for it considering my
antiphospholipid blood clotting disorder, that I was out of breath
with no known cause, and so I was the one to originally bring it up
to my doctors here in San Antonio.

At this time, I was already on oxygen 24/7, and the disease had
progressed to a point that I couldn't even walk across the room
without getting really short of breath, feeling like I was going to
pass out and my heart rate skyrocketing. When I brought it up to my
doctors locally, they were hesitant because they were like, "well,
it's really rare", and they're like, "well, maybe, but let's run
tests." I went through the whole battery of tests, and it wasn't
until I had my right heart catheterization in January of 2018, and
at the time the cardiologist that performed it, she said I didn't
have pulmonary hypertension. So I was kind of like, well, that's
good, but now we're back at square one.

Well, then my follow-up appointment of the pulmonologist, he was
like, "no, you do have it, and I'm sending you to a PH specialist."
So I ended up at a PH specialist here in San Antonio, and as soon
as I met with him, he asked me what I knew about the disease, and
at this point because my friend had told me about it, I had months
of looking it up online and learning about it, so I told him what I
knew, and he said I was pretty well informed and that he was
sending me as a recommendation to have PTE surgery in San
Diego.

I did have PTE surgery on August 7, 2018, so I'm about 10, 11
weeks out of surgery. I'm doing much better. I do still use oxygen
on exertion. I'm currently in pulmonary rehabilitation, and I wear
it when I work out, but I'm not needing it on my day-to-day
activities and I have seen a huge difference.

After my stroke was misdiagnosed, I realized I had to take my
health into my own hands. Prior to that, I relied on what the
doctors said, I felt like they knew best, I didn't have a medical
degree, and after two hospitals had misdiagnosed me, I knew
something was wrong, but I didn't listen to my gut. I listened to
the doctors. After that happened, I realized that it was really
important that I be my own health advocate.

When my friend suggested that this was a disease I could have, I
decided to go full force and use my energy to understand this
disease, to figure out if it's what I had, and to really push my
doctors. I really do feel like in a lot of ways I had to advocate
for the tests that I needed to have done. I was lucky to have a
friend who knew about this disease. He knew what tests I needed to
have done to get the diagnosis. He was a text away from answering
any of my questions, and he told me what tests to ask for, what
questions to ask for, and I was able to send him copies of my test
results and he could help me decipher them. I was really lucky to
have that, and not everyone has that access to someone who can help
guide them.

I just think that there's a lot of misinformation and
misconceptions, and I don't think a lot of doctors understand this
disease yet. Just like my cardiologist, I don't even know if she
knows what it is, because according to her, I didn't have it, and I
obviously did and do, so I just think there's a lot of information
that is still not being put out and getting to the doctors so that
they diagnose people properly.

Life has definitely opened up to me. It's amazing how I feel,
I'm not short of breath all the time. I can do things like walk my
dog or go to the grocery store and not be tied to an oxygen
machine. For the past year and a half I was on oxygen 24/7, so I
don't think you realize until you've gone through this, the amount
of freedom that you had taken from you and then that you get back
after, so I feel very free and very lucky to be on this side. I was
really scared of the surgery because I do have a blood clotting
disorder and I knew the risks going into that, so just to be on the
other side, the anxiety and the I guess frustration of it all has
really dissipated.

Advocacy is really important to me right now because it did take
so long to get diagnosed, even though it was about I guess two
years/a year and a half from thrombosis, at least known thrombosis
to the CTEPH. I had been experiencing symptoms five years before
that. Because of my missed stroke, I am really big on advocacy and
educating the community, knowing the signs of different diseases,
understanding our body, listening to our body, and learning how to
be our own health advocate.

I would love to help patients learn how to navigate their health
and the system, and so I am working on material to actually teach
people how to do that, how to take the right notes and where to
research and how to research, and how to reach out and how to talk
to your doctors. I feel like that's really important, and we need
to be responsible for our own health and not just hand it all over
to someone who sees us for five/ten minutes every once in a
while.

Also understand that for those of us living with these diseases,
we live a very different life. A little bit of empathy, compassion
can go a long way to help us in our world and navigating what we go
through. A little bit of self-love and compassion for ourselves too
that this is hard hands that we have been dealt, but that
ultimately the choice is ours in how we choose to live our life and
how we choose to deal with what we've been dealt. I always say it
is what we make it in life, and so I feel like me going through
this was part of me experiencing what I had to to lead me to where
I'm at, and where I'm at is really wanting to help others now.

About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global